What's really going on?

You all might probably know, if you're reading this blog, that I was diagnosed with Lupus and Fibromyalgia. I'm not entirely convinced that this diagnosis is accurate. Lupus is an illness that has remissions and flares. I have not once even been in remission in the 6 years that I have been sick.

While I do think Fibro is a correct part of my illness I think my symptoms like up more with Multiple Sclerosis, or MS. In the beginning every single medical professional thought that it sounded and looked like I had MS but my MRIs all came back showing no lesions on my brain. I wonder if I were to get another MRI now, 6 years later, if the lesions would show up.

I'm only getting worse and it really makes me wonder what is actually going on inside of my body and brain. Maybe I have all 3. Who knows?

If you're sick, like me, do you feel like you have the right diagnosis?

A Loss of Control and OCD

I originally had a post scheduled to go live today about the clothes that I wear that are comfortable even during my most painful days. Believe it or not, clothing is especially tricky when you're ill and in pain. That post will still go up, maybe next week, but an issue came up that I think is more pressing.

As I have lost control of my body and of my health I have developed OCD. I want to say, quickly, that I truly believe humans are creatures of habit and ritual and that all of us have OCD to a certain extent, however small or large. My OCD is growing increasingly more pronounced as my health becomes increasingly worse.

It makes sense, when you really think about it. A loss of control is really hard to deal with, in any sense, and so trying to make up for it in any other area is a totally normal and understandable response. The fact that it's normal doesn't make it any less embarrassing.

I can't stand germs. I can't stand being dirty. If someone is smoking near me (side note: eww) I need to come home and shower right away. If someone is hacking and coughing near me I need to come home and shower right away. I need to wash my clothes right away. I don't like the idea of touching things that many strangers before me have touched. It's not every single time, but it's enough to be something I need to work on.

Maybe we can chalk that up to being immune compromised. I can get sick very easily so maybe I just don't want any chance of catching something. That would be a good idea, except…

I can't go to bed without washing my face, feet, and hands. I can't stand the thought of bringing the dirty world and all of its germs into my bed at night. I have to wear fresh clothing to make sure everything is clean.

Sometimes I shower, go out, and then have to come home and shower again. This isn't every time but it's enough that I feel ashamed. Yesterday, for example, I went to the grocery store with my Mom after I showered and I had to come home and shower again. I had shampoo drip all over me and the smell was bothering me and people were coughing all over the store. My Mom knew I was showering again but I was so embarrassed about my Dad finding out that I got dressed quickly and blow-dried my hair so he couldn't tell.

I even feel embarrassed telling you all this, but there's a reason. I think it's okay to feel like you have lost something when you become ill and it's okay to try to make up for it in other ways. Have any of you felt like you've lost control being sick? Or dealt with OCD?